Giving Thanks
By Al Freedman, Ph.D.
Jack's name was typed on the first line, just above the surgeon's name. On the very
top, in plain black letters, the form simply read, "CONSENT FOR SURGERY AND
ANESTHESIA." Although I had no intention of actually reading the entire page, one
sentence caught my eye. "I am aware that the practice of medicine and surgery is not
an exact science and I acknowledge that no guarantees or assurances have been made
to me concerning the results……" I signed the form. The moment our six-month-old
baby was diagnosed with SMA six years ago, I learned there are no guarantees.
Many thoughts crossed my mind as Jack was wheeled away towards the operating
room, chirping away at the nurses, "Ride, ride, ride!." As the gurney turned the corner
and out of sight, I noticed the large sign on the silver swinging door, "OPERATING
ROOM - APPROPRIATE ATTIRE REQUIRED." For a moment, I smiled as I
imagined Jack and the doctors and nurses all decked out in black ties and gowns, with
an orchestra playing, as the surgery was performed.
But a split second later, Jack's empty wheelchair brought me back to reality. As we
walked from the operating room to the waiting area, I thought about the time Jack and
I had spent together at the swimming pool the morning before. As I moved Jack back
and forth through the water, I wondered when we would swim together again, and I
thought about how our pool time might be different following surgery. Jack's been in
the pool five days a week since he was two years old. The interruption of our familiar
routine felt very disconcerting. And in the back of my mind, I pondered what life
would be life without Jack. As the day for surgery approached, I again came face to
face with the realization that every day is truly a gift with our children.
At two o'clock that afternoon, the orthopedic surgeon appeared in the waiting room,
wearing scrubs and goggles perched on his head, and gave us the good news.
"Everything went very smoothly. Jack lost very little blood and the rod went in easily.
You should be able to see him in the PICU in a little while." I felt relieved, but only
momentarily. Immediately, I began bracing myself for life in the PICU (Pediatric
Intensive Care Unit). We'd been there before. I thought about how sick Jack had been
and wondered what he would look like now, just a few minutes following spinal
fusion surgery. We thanked the surgeon and headed down the hall to see our little boy.
I braced myself for what I knew was to come.
There was Jack, asleep and attached to a ventilator, intravenous lines, and monitors. I
counted at least ten lines attached to him, from head to toe. Two nurses circled his
bed, checking all the lines, watching Jack's vital signs, and reassuring us that all was
in order. The familiar monitor above Jack's bed, in three colors, displayed his heart
rate, respiration rate, and oxygen saturation. The alarms sounded randomly as the
nurses worked. After a while, you learn not to worry about those alarms. Something is
always beeping in the PICU.
For the next 48 hours, a ventilator breathed for Jack, he was heavily sedated, and he
was non-communicative. During these times when a child is at his weakest physically,
the hard work of the parent is emotional rather than physical. For those two days,
there was little for Anne and me to do but wait and worry. Jack didn't need our
attention. He needed the doctors and nurses. I looked forward to the time when Jack
would be feisty and bored and want to get out of bed. I looked forward to having to
work hard to entertain him and keep him occupied. I couldn't wait to become
exhausted moving Jack from side to side, read him story after story, watch the same
Disney video for the 6th time, and get up with him at all hours of the night. I've
learned when Jack becomes hard to take care of in the hospital, it's good news, the
first sign that he's on the road to recovery.
In the middle of the first night following Jack's surgery, I awoke to a familiar voice in
the hospital room. It was John, a respiratory therapist, talking softly to Jack as he
checked the settings on the ventilator. John had worked long and hard to help Jack
through earlier illnesses and we had come to rely on him as a kind and knowledgeable
professional in times of uncertainty. It was good to see John again, to know he was
still here working quietly, patiently, carefully. John's the kind of guy you want taking
care of your child. As we caught up on the past three years, John used his flashlight to
admire the family photos we had taped to the walls. As much as I'd rather not be in the
hospital with my child, I do feel fortunate to know John, and many other committed
professionals like him.
After John left to continue his rounds, I thought about the fifty-five nights Jack had
spent in the PICU. As I lay there watching Jack sleep, I couldn't help but think of the
children who hadn't come home from the PICU, and I couldn't help but see the faces
of their parents. I remembered the spring night three years ago when a 17-year-old girl
was rushed in to the unit, a day after her high school graduation. I remembered the
nurses and doctors rushing around, anxious to do something to help her. I remembered
the hush that came over the unit when they all realized nothing could be done to save
her. I will never forget that night.
I thought about baby Cynthia, taken by sudden infant death syndrome. I remembered
her parents sitting out in the hall late at night, exhausted and in shock, not long after
Cynthia had arrived at the hospital. "Please pray for our daughter," they asked as I
passed by. So I did. Early the next morning, they were still sitting in the same spot
when I came by pushing Jack in his wheelchair. Cynthia's father, who could not have
been older than 25, looked me in the eye and said, "We've been praying for your son."
He talked about Cynthia's short life and the joy she brought to her family. He said
they just couldn't go home yet, not just yet. Their baby girl had died, but Cynthia's
parents weren't ready to leave the hospital. I will always remember them.
Two days after surgery, Jack was successfully extubated. On the third day, he sat up
in his wheelchair for the first time. On day four, he was strong enough to be
discharged from the PICU to another floor in the hospital. And five days following
surgery, we brought Jack home, sore and fragile, but alive and happy to see his sister,
Cara, and his cat, Louie. We felt very thankful to have Jack home so soon. Doctors
and nurses can do amazing things. And so can our children.
There came a moment about ten days following Jack's diagnosis when I realized how
I was going to handle the impossible task of parenting a baby who, according to the
doctors, would live no more than another year. 'Appreciate every moment,' I told
myself. 'They've told us our baby has no future. In that case, the future is now. Don't
miss any opportunity. Stay focused on Jack, enjoy him, and allow him the pleasure of
all the things babies experience. Take walks, go places, see people, enjoy the
outdoors. Ten or twenty years from now', I said to myself, 'I want to be able to look
back at this time and know we treasured every moment, used every opportunity, and
gave Jack the best life he could have.' My goal at that moment was to be able to look
back and have no regrets about the life we had given our son.
Six years later, we're still at it. And I am thankful for each and every day.
Albert Freedman, Ph.D. is a psychologist in private practice and at Westtown School
in Westtown, PA. Al and his wife Anne are the parents of Jack (1995) and Cara
(2000). Al's essay, "The Future is Now," is included in the recent book, You Will
Dream New Dreams: Inspiring Personal Stories by Parents of Children with
Disabilities (Kensington Publishers, 2001).
Albert Freedman, Ph.D., is a child and family psychologist in private practice near
Philadelphia, PA. His son, Jack, was born in 1995 and is affected by SMA Type 1.
You are welcome to contact Al at freedman@fsma.org